Digestive Disease Institute of the Cleveland Clinic review

[Regular Joe]

Hi all,

Wednesday I visited my new GI who is with the Digestive Disease Institute of the Cleveland Clinic. He interviewed me for about an hour and a half - this guy is thorough and specializes in Crohn's Disease. On the other side of the coin, he also specilizes in hepatolgy and pathobiology. It was a good visit, and I'm comfortable with him.

Without all the records, he said he's not going to "rubber stamp" a Crohn's Disease diagnosis and be done. He wants to "re-assess", and he was also interested in my recent lung surgery before Crohn's symptoms appeared. Actually, he got me pretty worried because he's quizzical and very knowledgeable about Crohn's. He said "Right now I have more questions than answers."

With the records I gave him, I think he was comfortable with everybody else's "probably IBD" and "looks like Crohn's Disease" workups. So he's treating me with "Let's just say you have Crohn's Disease. What if this is mild Crohn's?" Then he gets this smile on his face and the attitude of "You have mild Crohn's. So now what?"

He said the symptoms I'm having on don't correspond to the level of my disease. This isn't acting like a "flare". He described to me how flares pretty much have an onset and remain active until they go into remission. Flares don't get active and go away for two weeks and show up again and go away again in (nearly predicatable) "episodes". In other words, he's stipulating "Mild Crohn's", but there has to be more. My records indicate mild disease, but my symptoms are beyond mild Crohn's. Mild Crohn's wouldn't have me in harsh pain or getting me into the ER. This got me a little bit unnerved - no - a LOT unnerved!

He said we "don't want to miss the boat with this". He said there could be more disease in the small intestine that we can't see, but X-rays would help him determine that. The feeling I got was he wants to "rule out" certain things before we work on the Crohn's problem. If it's "Mild Crohn's", it will show up and we can deal with that. But if it's something worse we better catch it now. He outlined his plan starting from scratch. He drew blood to test my kidney function and scheduled a CT scan next week. This will be the first CT I've had since surgery. CT scans worry the crap out of me. CT scans reveal tumors, and I just had a big one removed that I worry about coming back.

He was BIG about no smoking and no NSAIDS - those are definite triggers for the disease. He said don't take NSAID's because they will make your Crohn's worse. But he also said I should take my "baby asprin" (81mg) because he'd rather see me with aggravated Crohn's, than to see me having a stroke.

So I have a few questions I'd like to throw out to see what is happening in your world of Crohn's.

-Does anyone have "episodic" flare-ups? Does anyone get severe flare symptoms (diarrhea, cramps, nausea, etc.) that last 1-4 days followed by up to 2 weeks of mild symptoms, then another 1-4 days of severe symptoms then another 2 weeks of mild symptoms, and so on for months?

-Does anyone get arthritis-like joint pain when a flare is active?

-Does anyone else have "Mild Crohn's", and if so, what does it feel like?

I appreciate your help - thanks for being here.
Joseph

 

[beth]

Unnerved or not, I think you have someone who will get to the bottom (ha!) of your problems.

I get mini-flares when I'm trying out foods that upset me for maybe a day or three but I usually get back to being asymptomatic pretty quickly.

I dont know what is really meant by mild Crohn's. I had quite severe inflammation in my colon, and suspected further in to small bowel. But it quickly responded to diet - at least in the colon.

Joint pain I do get. Particularly jaw, neck, back and shoulder - sort of like gravel in them when I move, occasional 'locking' and impressive cracks, as well as a general variable intensity ache - I'd be very interested in a description of what you get.

 

[Cookie]

Hi Joe,

What is the basis for your "mild" Crohn's diagnosis? I'm not sure I ever quite understood that. I thought that the level of severity of the disease was based on the symptoms, but if your symptoms don't correspond with the "level" of disease, why not change the diagnosis? If someone is diagnosed with mild crohn's, will it always remain mild crohn's, or can it progress? I was originally diagnosed with mild Crohn's, even though I was having diarrhea up to 20 times per day. When I switched GIs and told him I had mild Crohn's, he said "If you have fistulas, your Crohn's is moderate." So, who knows...it seems to be a lot in inconsistancies to me. I guess it doesn't matter, as long as my symptoms are being treated.

 

[imisspopcorn]

This guy sounds really good. I hope you get down to the bottom of all these problems.

When I am flaring, My whole body hurts. I have joint pain, muscle aches etc. It is very similar to the feeling of running a fever. Having a fever and the flaring process (is that a word?) all trigger the inflammatory response in our bodies. The thing is....the meds we take can mask some of the symptoms. Just like when you take a Tylenol for a fever. The cause of the fever is still there (infection) you have just masked the body's response to the infection.

I definitely have good days and bad days. I think on good days, I'm not having as many symptoms even though the disease is still there.

I don't think I have episodic flares. Right now I have no joint pain/ aches. I do have the other symptoms such as multiple episodes of D. I'm not flaring, but I'm on my way to remission.

I hope my answer makes sense to you? I don't think this is a cookie cutter disease. I wish it was. I think we could have better treatments if everyone responded the same.

 

[drew_wymore]

Hey Joseph. First welcome. Second those "episodic" periods sound almost identical to what I experienced when I first got sick and it really perplexed quite a few doctors. I too, have what appears to be "mild, which is pretty damn relative if you ask me" ... disease in my small bowel. I have recently also been diagnosed with CVID, an immune disorder which can cause all sorts of random crazy stuff to happen including auto immune (read crohns) like symptoms. This guy sounds good though, sort of like the doc(s) I see now, as long as they keep questioning things it's better than rubber stamping something and treating it as such. Hopefully things will get sorted for you soon enough though so you can be on the right treatment(s).

 

[CrohnieCarolyn]

Hi all,

Wednesday I visited my new GI who is with the Digestive Disease Institute of the Cleveland Clinic. He interviewed me for about an hour and a half - this guy is thorough and specializes in Crohn's Disease. On the other side of the coin, he also specilizes in hepatolgy and pathobiology. It was a good visit, and I'm comfortable with him.

Without all the records, he said he's not going to "rubber stamp" a Crohn's Disease diagnosis and be done. He wants to "re-assess", and he was also interested in my recent lung surgery before Crohn's symptoms appeared. Actually, he got me pretty worried because he's quizzical and very knowledgeable about Crohn's. He said "Right now I have more questions than answers."

With the records I gave him, I think he was comfortable with everybody else's "probably IBD" and "looks like Crohn's Disease" workups. So he's treating me with "Let's just say you have Crohn's Disease. What if this is mild Crohn's?" Then he gets this smile on his face and the attitude of "You have mild Crohn's. So now what?"

He said the symptoms I'm having on don't correspond to the level of my disease. This isn't acting like a "flare". He described to me how flares pretty much have an onset and remain active until they go into remission. Flares don't get active and go away for two weeks and show up again and go away again in (nearly predicatable) "episodes". In other words, he's stipulating "Mild Crohn's", but there has to be more. My records indicate mild disease, but my symptoms are beyond mild Crohn's. Mild Crohn's wouldn't have me in harsh pain or getting me into the ER. This got me a little bit unnerved - no - a LOT unnerved!

He said we "don't want to miss the boat with this". He said there could be more disease in the small intestine that we can't see, but X-rays would help him determine that. The feeling I got was he wants to "rule out" certain things before we work on the Crohn's problem. If it's "Mild Crohn's", it will show up and we can deal with that. But if it's something worse we better catch it now. He outlined his plan starting from scratch. He drew blood to test my kidney function and scheduled a CT scan next week. This will be the first CT I've had since surgery. CT scans worry the crap out of me. CT scans reveal tumors, and I just had a big one removed that I worry about coming back.

He was BIG about no smoking and no NSAIDS - those are definite triggers for the disease. He said don't take NSAID's because they will make your Crohn's worse. But he also said I should take my "baby asprin" (81mg) because he'd rather see me with aggravated Crohn's, than to see me having a stroke.

So I have a few questions I'd like to throw out to see what is happening in your world of Crohn's.

-Does anyone have "episodic" flare-ups? Does anyone get severe flare symptoms (diarrhea, cramps, nausea, etc.) that last 1-4 days followed by up to 2 weeks of mild symptoms, then another 1-4 days of severe symptoms then another 2 weeks of mild symptoms, and so on for months?

-Does anyone get arthritis-like joint pain when a flare is active?

-Does anyone else have "Mild Crohn's", and if so, what does it feel like?

I appreciate your help - thanks for being here.

Joseph

I get what you described all the time - the severe flare symptomes that last 1-4 days then about 2 weeks of milder symptoms - then another 1-4 days of severe symptoms then another 2 weeks of the mild ones again - all this was totally arrested while on Remicade but since switching to Cimzia a few weeks ago it has all come back and I have been flaring for 2 weeks...I also get terrible joint pain according to the severity of the flare...here's hoping the Cimzia kicks in soooooon and your doc finds some solutions for you...